I need help!!!

[jumpinjiminy]

If you have interstitial cystitis, cranberry juice can make it worse. How is your blood calcium level? Have they looked into why you make so many kidney stones? Somethings not right there. Have you been tested for parathyroid problems?

[jumpinjiminy]

As to the headaches, baclofen got rid of mine as it addressed the muscle spasms and trigger points that were causing them. Sometimes the dose isn't high enough to handle acute spasticity that shows up from time to time, but for the low level chronic stuff it works great for me.

They've also started me on topomax and verapamil for migraines - both address different aspects of neuroinflammation that contribute to headaches from a vascular and inflammatory process.

Sometimes they have to hit it from all angles before they can sort out what's going to work. And sometimes it takes a combination of meds to work because of the complicated process going on behind the scenes.

It might take a long time to get in to see a better neuro. There is someone else here in the PA area with an excellent MS doc. Maybe she will see this thread and point you in the right direction. I'm hoping she's near your area.

[barelracer]

cranberry juice

if it is IC, you do NOT want to drink cranberry juice!!!! it is very irritating to the bladder!!!!

just thought i would warn you, maybe try cutting it out? anything acidic, carbonated, spicey, etc...

hope you get some answers and relief soon!!!!!

[CNE920]

I drink nothing but cranberry juices or water every day ever since. This is why I'm afraid that its not anything UTI, etc related....

It seems like I saw someone's message on another thread within the last week about a condition often confused with UTI but that was made worse with cranberry juice. Trying to remember what it was ... it might have been the interst. cystitis you mentioned. Might be worth searching the recent threads. I have no personal experience with this, so sorry I can't be of more help.

[craigaroo74]

Thanks to everyone for all of your thoughts and suggestions...I am finding out more here in 3 hours than I've found from dr's in the past 9 months...
I have yet another "pesky" question: Does anyone out there have any info/experience about transverse myelitis?...I havent really asked dr's yet, and was just curious as to what exactly it is, and/or its difference betwen MS?

[craigaroo74]

Yet another crazy question from the "new" guy:
Does anyone here experience any jaw stiffness (not necessarily pain), but more stiffness like you were eating a jawbreaker kind of feeling?
Its very bizzare and I just kinda noticed it earlier today...
Thanks again to all of you....

[MrsBones]

Thanks to everyone for all of your thoughts and suggestions...I am finding out more here in 3 hours than I've found from dr's in the past 9 months...
I have yet another "pesky" question: Does anyone out there have any info/experience about transverse myelitis?...I havent really asked dr's yet, and was just curious as to what exactly it is, and/or its difference betwen MS?

http://www.ninds.nih.gov/disorders/t...semyelitis.htm

If you're willing to drive into NJ, I would highly, highly recommend my neuro. A very caring doc who treats the whole patient not just the obvious MS stuff. If he sees something up that isn't his area of expertise, he sends you to the right specialist to get you help. My email is still in my profile, I believe. Please feel free to email me if you want his info.

Speaking of which, maybe a visit to a urologist is in order,too. Your problem may not may not be MS related, but either way, a urologist is the one to help figure that out.

[craigaroo74]

Thanks Mrs Bones...whereabouts in Nj?
I actually scheduled a new appt at Upenn again in April...they want me to get an updated MRI and see whats happening since my last trip there in Dec....

[wldirsrose]

DOCTOR IN PHILLY AREA

Craig, I live n the Trenton area. I went to Philly and was very disappointed. My physical therapist recommended the MS Center at Centra State Medical Center in Freehold NJ. I love it there! Much better care, no annoying traffic and very convenient free parking. There are two male doctors. I see Dr. Amos Katz. I wish you all the best.

[MrsBones]

Thanks Mrs Bones...whereabouts in Nj?
I actually scheduled a new appt at Upenn again in April...they want me to get an updated MRI and see whats happening since my last trip there in Dec....

He's in Stratford, so it's not hideously far if you're in the Philly area. I travel about an hour to see him myself. He's well worth it.

[craigaroo74]

Bones and Rose-
Thank you both for your suggestions; I appreciate it.

Anyone have a symptom that is hard to explain even to the dr's..(A feeling in the arms; especially when lying down where it feels like you dont have good circulation)...Thats the best way i can even describe it. It is so very annoying that it prevents proper rest, etc.
None of the dr's I've mentioned it to have no real explanation for it. I dont know if its an "MS thing", or if its related to meds, or both?

[jcooper75]

Sorry everyone, I haven't fully filled out all of my "stats" on here yet; I am in the suburbs of Philadelphia...
I just had 5 trigger point injections in my back the other day by a pain specialist, and they do not seem to help; as of yet at least.
She did mention the botox idea though.....
Did you get them in your back area?

My botox injections went in the forehead, the temple, the back of the head, down my neck, and across my shoulders. There were something like 34 injections altogether.
Also, when I was first hospitalized with symptoms they called it Transverse Myletis. I had numb feet and had lost the ability to urinate. It took so long to determine the cause that I think they were just grabbing on to anything they could at the time.

[craigaroo74]

Thanks jcooper...
Its just so hard to figure out "exactly" what is going on when you have so many different pain areas that vary and move day to day, and when most dr's get you in and out as quickly as possible like an assembly line.
I appreciate it.